Germline Editing Objections — Vol. 2
As I wrote in my last post in this series, “Germline Editing Objections — Vol. 1,” at the pace genetic science is progressing, germline editing will likely be just as safe and effective in stopping debilitating genetic diseases like Huntington’s disease sooner than we expect. Dr. Jennifer Doudna, the co-discoverer of the CRISPR gene editing system, wrote in her book Crack in Creation that this prediction is “almost certain.”
The major, long term obstacle to using germline editing in the clinic is restrictive public policies driven by negative public opinion. In the last post I argued that germline editing offers advantages over using in vitro fertilization (IVF) and pre-implantation genetic diagnosis (PGD) alone. In this edition I will examine whether germline editing is a new incarnation of eugenics.
Objection: A New Eugenics
Another common objection that deserves serious thought is that germline editing will exacerbate inequality and could encourage a resurrection of eugenic practices. In the most extreme, nightmarish version of this concern, societies become stratified not only socio-economically, but also genetically. This genetically “perfect” class oppresses those who either could not or would not use this technology and retain unedited genomes. More generally, however, there are concerns that the use of germline editing would only heighten the discrimination against those with disabilities such as Downs Syndrome and limit any benefits of genetic diversity.
Scholars and scientists have grappled with the question of whether medical genetics is “a reincarnation of … eugenics in a new guise” for several decades. Writing in a 1997 book on genetic ethics, Dr. Arthur Dyck of Harvard Divinity School frankly asserts, “Eugenics is not simply a matter of history. Eugenics is practiced today.” Similarly, author Dorothy Wertz conducted a survey of genetic professionals in 1998 and provocatively titled the write up of the study “Eugenics is alive and well.” The abstract for this study states, “Individual, but not state-coerced, eugenics survives in much modern genetic practice.”
The basic argument offered by those who are concerned that medical genetics is influenced by eugenics is that genetic technology like PGD and gene editing[1] allows parents to produce children that possess desirable traits and do not possess undesirable traits. This concept of desirability, being subjective, will incorporate “social prejudices and discrimination,” eventually “inscribing those kinds of social prejudices in biology.”
Since germline gene editing procedures will likely be expensive, especially early in their development, wealthy parents will be the demographic most able to utilize them. This will only widen the gap between rich and poor, the argument continues, “creating a class of ‘genobility.’”
These are serious accusations and not outside the realm of the easily imaginable, especially if parents go beyond using this technology therapeutically and begin to use it to “enhance” their children. In response to such charges, the late geneticist Charles Epstein wisely recommended asking “whether the accusation is a meaningful one, whether … it is really true that we are setting goals and engaging in practices that could … be considered as eugenic.”
Because of the extremely sensitive nature of this eugenics question, it can be difficult to engage in sober, balanced consideration. Often when opponents of gene editing call such practices eugenics, most listeners immediately turn against such treatments without any further consideration simply because “the mere use of the word … brings forth very visceral responses.” In her book on eugenics and biomedicine, Dr. Diane Paul notes that “the term is wielded like a club. To label a policy ‘eugenics’ is to say, in effect, that it is not just bad but beyond the pale.” Such accusations are generally enough for people to rule any policy out at once, as Oxford biologist Richard Dawkins wrote in his book The Selfish Gene.
However, as I wrote in my last post in this series, “the potential health benefits of stopping genetic disease in the germline that would accrue to both the patient and her progeny demand that this treatment be pursued.” That necessitates that we delve into this accusation and question whether it is meaningful or not and what we ought to do about it.
Eugenics: A Definition
The term eugenics was originally coined by a British scientist and half-cousin to Charles Darwin, Francis Galton in 1883. The word is derived from ancient Greek and literally means “good breeding” or “well-born.”
Galton was influenced by Darwin’s writing on natural selection. Darwin proposed that the natural world behaved in such a way that the hardiest, most advantageous traits (what we now know as genes) are passed on to the next generation, while traits that inhibit survival gradually fade from a population. Galton wanted to create a science out of natural selection and apply it to human society in order to allow “the more suitable races or strains of blood a better chance of prevailing speedily over the less suitable.”
These ideas, one strain of which became known as Social Darwinism, spread quickly, heavily influencing American science and politics. A research institute called the Eugenics Records Office was opened in Cold Springs Harbor Laboratory in 1910, and an academic organization called the American Eugenics Society was founded in 1926 to promote eugenics education programs. In 1924, Congress passed an immigration law that set annual caps on the number of immigrants entering the United States in order to preserve the “good stock” of the American gene pool. Perhaps the most egregious step taken in pursuance of eugenics was the forced sterilization campaigns undertaken throughout the first half of the 20th Century led by California, Michigan, and Virginia.
These ideas and methods, developed in the United States, were adopted by and taken to disturbing extremes by the Nazi regime in Germany. In an attempt to cleanse the gene pool of “inferior stock,” Nazi scientists and soldiers oversaw mass exterminations of Jews, Slavs, and gypsies, among others. The horrific images and reports of concentration camps that emerged during and after the Second World War greatly reduced popular support of eugenics around the world, prompting many previous advocates to completely disavow the discipline.
Eugenics’ Underlying Falsehoods
Any discussion of eugenics demands, at the beginning, an unequivocal admission that systematized eugenics is wrong. At its foundation are questionable science and false beliefs. The modern attitude of revulsion to this “science” is quite appropriate.
The theoretical work of Galton and his disciples tended toward one ultimate goal: “the improvement of humanity through selective breeding.” Like a religion, this vision needed a new order of priests: men like Galton who would determine what “improvement” actually meant and which citizens possessed these qualities and which did not. It also necessitated the coercive power of the state in order to fully operationalize it and induce citizens to abide by the priests’ judgements.
Thus, eugenics, as conceptualized by Galton and others, was morally wrong in that it denied the inherent dignity of the human being. Supporters of eugenics labelled broad classes of people as undesirable, stripped away their personal autonomy, and brutally sterilized or even killed them.
Eugenics also invited the deep personal prejudices of those arbiters of desirability to influence those decisions, which were not even in their power to make in the first place. No mere mortal is in a position to place themselves in the divine seat of judgement to declare a fellow human being undesirable and thus unworthy of any of the joys of love, reproduction, and family.
In contrast to modern genetic medicine, the early eugenicists were most interested in traits like criminality, alcoholism, and intellectual disabilities and illnesses. They believed that these qualities were hardwired into the genome and could be remedied with simply genetic fixes that could be brought about by prohibiting certain classes of people from reproducing. Our modern understanding of genetics has refuted this belief and shown us that complex traits like intelligence are extremely difficult to predict by simply reading the genome. By no means is an individual guaranteed to become a criminal or an alcoholic if they poses or lack certain genes.
Is Germline Editing Different?
Modern genetic medicine, and especially germline editing, partially shares a goal with eugenics (that of improving humanity), but the method and rationale for realizing this goal differs sharply. This overlap ought not to be worrisome. After all, many activities that humans undertake are motivated by a desire to improve humanity or the next generation. The history of medicine is the story of the improvement of the human race through medical intervention. The essence of parenting is one generation sacrificing in order that the next generation should surpass its achievements. Improvement, in itself, is not cause for ethical concern. It is the surrounding details that could be dangerous.
Perhaps the most important detail that differs between eugenics and genetic medicine as practiced is that genetics is divorced from the coercive power of the state, at least in the United States. There are no longer state-sponsored sterilization campaigns or ethnic cleansings. Instead, individuals are the choice makers, motivated by deep parental, protective feelings and a desire to provide their child the best opportunity for a life free from suffering.
Granted, the personal prejudices of the prospective parents that influence the traits for which they want to edit could be substituted for those of the doctor or government official. Still, the uncoordinated choices of individual parents will most likely not have the same devastating impact as a coordinated, government-backed selective breeding regime, especially if these choices are limited to therapeutic interventions.
Furthermore, each of these parents will be advised by a physician with the technical knowledge needed to actually perform a complicated genetic procedure. There may be a few rogue actors, but for the most part, physicians will act as another protective layer preventing the worst, most unethical outcomes. The medical profession is especially sensitive to these difficult issues, being always aware of the blot on their record created by their historical involvement in eugenics movements and being eager that these atrocities not be repeated. Already several bodies of experts have tried to expound best practices to promote ethical behavior when it comes to gene editing.
As it is, it seems that personal prejudices already influence the traits and socio-economic situation of the next generation by motivating the choice of mate that individuals select. More often than not, individuals are attracted to people that are like themselves because those people are familiar. This is known as the mere-exposure effect. Over time, this can widen gaps between classes of people, unintentionally leading to inequalities. While germline editing could exacerbate these problems, it could as easily help to mend some of these gaps. Most likely it will not have a large effect in the long run in either widening or closing the inequalities that already exist in the United States and around the world.
The goal of the “improvement of humanity” can be achieved through one or both of two methods: either by remedying abnormalities and illnesses that arise in humans (like correcting the gene mutation that leads to Huntington’s disease), or by enhancing humans’ positive qualities (like editing genes to boost intelligence). Most of the early eugenicists focused on the enhancement side of the equation, while modern genetics has only been comfortable pursuing therapeutic interventions.
This is an important divergence since scientists understand the genetic causes of many diseases much better than they understand the genetic foundation of complex traits like intelligence or athleticism. Additionally, for many of the most devastating genetic diseases, a physician can practically guarantee a child will suffer from the condition by simply identifying the mutation. For example, Huntington’s disease is caused by a mutation in a gene called HTT found on chromosome 4. In the mutated form of the gene a three nucleotide sequence repeats more than the normal 10–35 times. If the sequence repeats 40 times or more, that individual is practically guaranteed to suffer from the disease.
This level of surety is important because it eliminates any alternative, less-controversial methods to prevent a child’s future suffering. If an embryo is found to possess more than forty repeats in the HTT gene, that child will suffer, and likely die, from complications associated with Huntington’s unless an intervention to correct the gene is made, thus justifying the use of germline editing.
Debilitating or fatal disease is clearly an evil that justifies the use of germline editing; and, for many of these diseases, scientists can predict their occurrence with a high degree of surety early enough that they could be corrected before the consequences are felt.
What About Non-Fatal, Atypical Conditions?
Recently, the question of non-fatal, genetic disabilities like Down syndrome have dominated the eugenics discussion. Individuals that have Down syndrome or other similar conditions can usually live full, productive lives. While conditions like Down syndrome can be accompanied by other medical conditions like Alzheimer’s or heart defects, the majority of these individuals live typical life-spans of sixty years or more.
These non-fatal conditions present a grey area when compared with the clear evil of fatal conditions. Not at issue is the personhood of any individual who has one of these conditions. With germline editing the whole controversy of selective abortion can be sidestepped since editing can prevent the condition without eliminating the child. Instead, the question becomes whether the condition like Down syndrome itself is a positive good that ought to be protected. This question necessarily involves subjective determinations of what is “normal,” “good,” or “ideal.” Thus if one considers any subjective determination of what is good or best as eugenic, then intervening to prevent these conditions will be problematic.
Some of these issues have already been considered in debates about the ethics of aborting children who test positive for one of these non-fatal conditions. While no satisfactory solution has emerged, many activists who support the rights and dignity of the disabled also express support for the legal right to what they would consider a eugenic abortion. It would seem that this argument for almost absolute bodily autonomy would also establish a legal right to genetically edit the child, as opposed to aborting the child. This does not answer whether germline editing is or is not eugenics, but it at least offers a legal path forward while that question continues to be debated.
In late August 2017, journalist David Perry, who has a son that has Down syndrome, wrote an article in The Nation advocating that information and openness replace fear and stigma when it comes to prenatal diagnoses of condition like Down syndrome, and suggesting that, at least in places like Iceland, society is biased towards aborting these individuals. Perry believes this smacks of eugenic impulses. He states, “Society can be changed. [My son’s] genes don’t need to be.”
Perry identifies as pro-choice. He recently wrote another article that was also published by The Nation that highlights the tension between reproductive rights and the rights of those with disabilities. While Perry has “spent many years now asserting the need to reorder how we ascribe value to diverse human lives,” he declares in this article that he “affirmatively support[s] the right to eugenic abortion …”
Lawyer Shain Neumeier similarly laments, “The hardest thing about the current framing of the abortion debate for disability justice advocates is that it forces us to choose between two of our core convictions: Inherent human worth and bodily autonomy.” Neumeier is autistic and has a number of other disabilities including a cleft lip and palette. She has devoted her life to being an advocate for individuals like herself. Nevertheless, “My nearly absolute belief in bodily autonomy means nothing if I’d support forcing a person to remain pregnant and give birth against their will for any reason because of my own opposition to eugenics.”
Again, this is a legal argument and still does not solve the moral and philosophical question of whether this procedure is eugenic in nature, a belief that both Perry and Neumeier are likely to hold.
Unfortunately, I think this problem is impossible to solve since, as I said above, it necessarily involves subjective questions about what is a normal or good gene, and really whether a “disability” is actually a disability at all. These are extremely difficult questions, certainly beyond my ability to satisfactorily answer.
Conclusion
Discussions about technology policy tend to have a proportionality problem, meaning that commentators gravitate to the extreme ends of possibility, envisioning either a future utopia or an apocalypse instead of debating reality, which is somewhere in the middle of the spectrum.
Even confined to the middle of that spectrum, I do not think it hyperbole to say that germline editing has the potential to save thousands of lives. I think it more unrealistic to allege that allowing germline editing to proceed will resurrect the specter of Nazi gas chambers or American prison sterilizations. In this age of hyper-vigilance and revulsion to anything that resembles eugenics, citizens will not stand for a repeat of these horrors. Ought we to allow the vanishingly slim possibility of horror to preclude serious, real benefits for a great many patients?
Nevertheless there are serious concerns that absolutely cannot be taken lightly. These are some of the most consequential problems of our time.
While it is evident that gene editing and modern genetics possess significant differences when compared to eugenics, there are still grey areas concerning their use. We may never be presented with a clean, clear answer definitively solving this issue. Likely, over time society will grow more comfortable with this technology and begin to incorporate it into clinical practice as was the case with technologies like in vitro fertilization. But perhaps not.
In the meantime, we ought to foster a society motivated not by fear and stigma, but dedicated to full information, openness, and acceptance, as Perry recommends. Beyond that, decisions, especially about therapeutic interventions, ought to be left to individual parents and their physicians guided by the strong bonds of parental love and protectiveness.
[1] The entry for eugenics in the 15th edition of The New Encyclopedia Britannica even went so far as to call modern genetic counseling “in a special sense a eugenic activity… a form of negative eugenics, in that it attempts to prevent the conception or birth of individuals with most serious forms of maldevelopment…”
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Additional Reading
“Germline Editing Objections — Vol. 1”
“Advanced Medical Technology: Four Burgeoning Issues From 2017”
